Living with coloboma

Coloboma is a relatively rare congenital condition where tissue in or around the eye is missing. The condition is present from birth because it occurs when the eye develops in the womb during the first three months of growth.

Coloboma can occur in one or both eyes (bilateral coloboma), and there are different types of the condition because different parts of the eye’s structure can be impacted. 

The type of coloboma will influence the extent of vision loss and what treatments are available. Not all forms of coloboma cause sight loss, but if it does impact your vision and you’re registered as sight impaired, then support is available. You can find more information on the causes, symptoms, and treatments on the NHS’ coloboma page.

How might coloboma affect daily life?

The extent to which coloboma impacts daily life depends on how much it affects your vision. For example, with iris coloboma which affects the coloured part of the eye, most people still retain a good amount of sight.

On the other hand, if your retina, macula, or optic nerve are affected, a vision impairment is more likely to occur. If this is the case, you or your child may need some adjustments and aids around the house and at work or school to minimise the impact on daily life. 

Additionally, coloboma can lead to other eye conditions, such as glaucoma, retinal detachment, or cataracts. If coloboma or any other eye condition affects your vision, Guide Dogs can offer support to help you live independently and well. 

Working with coloboma

If your coloboma causes visual impairment, you can still work with some support. Your employers have a legal duty to make reasonable adjustments to meet your needs at work. Some adjustments could include:

• Screen reader software, voice recognition programmes, apps and accessibility features on digital devices
• Adjustments to lighting
• Visual aids such as magnifying lenses

The Access to Work scheme also provides employers with grants to buy equipment or services to support you at work.

That said, some job roles do require a specific level of vision in both eyes, such as being a pilot, a police officer, and some armed forces roles. Ask your child's eye specialist for more information when they start thinking about their career choices.

Driving with coloboma

Many people living with coloboma won't experience reduced vision and should have no problems with driving.

Even if your vision is affected, you may be able to drive if your sight meets the DVLA's minimum required eyesight standard, so speak to your ophthalmologist for advice.

If you develop another condition, such as cataracts or glaucoma, this could affect your eyesight, and you may need to notify the DVLA.

Support for people living with coloboma

There are various resources, charities,  and services that can support you or your child with coloboma. Practical support can help with the skills needed for an independent, active life. Additionally, emotional support can help address the feelings you or your child might sometimes have about living with a vision impairment. 

Support for children living with coloboma

As it’s not always possible to tell how a child's vision will be affected by coloboma, early support is key to making the most of their vision as it develops. Here are a few tips:

• Provide lots of stimulation at a young age to help their visual system develop. Get ideas and resources specially designed for children with vision impairment.
• Talk to your child's school so they understand how coloboma affects them and the adaptations they need. Qualified Teachers of children with a Vision Impairment (QTVI) can provide expert support and advice. Find out more about getting education support for your child.
• Find out how we offer support and connections to other families. Other families living with visual impairment can be a great source of emotional support, especially in the early days when you're getting used to a diagnosis and wondering what the future may hold.  

Support for adults living with coloboma

If your coloboma means you're living with a visual impairment, there's lots of support and advice available:

• Your eye doctor can refer you to a specialist low-vision clinic for practical advice on equipment and other support.
• Social services can assess the support you need to live independently at home. For example, help with cooking, cleaning, staying safe at home, and getting around easily.
• Technology and equipment can help with daily life, from simple tools like a liquid level indicator to stop you from overfilling your mug, screen reading software, voice recognition technology, E-readers, and accessibility features and apps on smartphones.

There are also a range of organisations to support you or your child:

• MACS (Microphthalmia, Anophthalmia and Coloboma Support) – a support group with practical advice and opportunities for families living with coloboma and other eye conditions.
• Look UK – an organisation that supports young people living with vision impairment. 

Frequently asked questions